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Posted by on Dec 10, 2014 in Foundation NewsLine |

ALERT! Actelion US ~ Zavesca (miglustat) Patient Co-pay Program ~ Program Changes Effective January 1st, 2015 ~ SUSPENDED!


After a number of our NNPDF family membership received a notification from Actelion that their sponsored Patient Co-pay Program for Zavesca would be changed to cover ONLY adult patients who are 18 years of age or older, the NNPDF reached out to representatives at Actelion US to discuss the detrimental impact that this policy change would have on the NPC patient population in the United States currently being prescribed Zavesca (many of whom are children and have been prescribed Zavesca for years.)

After further discussions between the NNPDF and Actelion US, we have been advised by Actelion US that implementation of this program is going to be SUSPENDED at this time. 

Actelion US has indicated that in making this program change ~ they did not fully understand the catastrophic impact that this change would have on the NPC patient community.  In making this decision it was noted that Actelion US understands the significant need to ensure that there will NOT be a disruption of this program which ultimately leads to the care and well-being for our NPC patients in the United States.

Further, the NNPDF has been advised that an official notification from Actelion US will be mailed to the families whose children are currently prescribed Zavesca and who had originally received documentation advising them of the changes in the Zavesca Patient Co-pay Program.  This document will advise of the suspension of this program.  In addition, Actelion US has indicated that they will advise the support team at Accredo Specialty Pharmacy as to the suspension of this program to guarantee that there will NOT be a disruption of the Actelion US ~ patient Co-pay Program on January 1st, 2015 for any patient (adult or child) being prescribed Zavesca.

The Actelion US decision to suspend the implementation of this change is in line with their corporate philosophy to strive to treat more patients with ground-breaking therapies, a mission which both inspires and motivates them as a corporation. 

The NNPDF is thankful that our family membership reached out to us for support in this matter and that we were able to inform Actelion US the serious necessity that this program continue without disruption.  Actelion US will continue to be in contact with the NNPDF to keep us appraised of any program or corporate changes which may impact our patient membership in the future.

If you should have any questions pertaining to this matter ~ and/or ~ you run into problems with coverage of this medication in the New Year ~ please feel free to contact the NNPDF Central Offices.

Kind regards,

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